Today, January 23rd,
is a day that is being promoted as a day " to commemorate the lives lived
by people with disabilities who were locked away, who ARE locked away from full
participation in society. It was also established to remember those, our
elders, who have worked tirelessly for inclusion and access, for the word 'all'
to actually mean 'all'" (Dave Hingsburger). Here are my thoughts……
PRELUDE
Ricki was lucky in many
respects. She lived in an era past those of the big institution, the likes of
which I once saw (shortly before their closing) in the early 1970's. But Ricki (and through her, I) were witness
to part of the continuing struggle to let society realize that people with
intellectual disabilities are PEOPLE, and can be valued and productive ones as
well.
How numerous were the times
that people addressed me rather than Ricki in asking questions that could have
been directed to her……
How often did I witness people
underestimating her due to the obvious fact that she had Down syndrome……
How often did people assume
that I was a "saint" because I had Ricki? (I won't say she was always
an easy teenager, but few teens are.) Sometimes when people stop me and try to
console me by saying that "You did everything you could", do they
realize that guilt is NOT my problem, but that I simply MISS her?!?
And one of the things I have
felt most since Ricki's death is that I want her to be REMEMBERED, not just to
be an entity that disappeared.
We accomplished what we did in
the battle for Ricki's inclusion due to the work of many advocates before us.
Today I salute them. And I try to comprehend that there is a huge population,
of institutionalized adults, that no one remembers.
And I remember with sadness the
terrible stain on mankind who agreed for era after era to shut away those who
were different, less abled, and sometimes less productive.
The terrific prejudice and
assumptions that follow those with disabilities still exists today. And to a
large extent, isolation from the larger community is still very prevalent. And
this is something we need to keep working at……
I Accuse
One of the battles we are still
fighting for today is that of equality in medical services. Battles for the
right to heart transplants, and other services for the intellectually disabled
is not yet over. And this battle extends not only to those areas where there is
a choice between "this" recipient, or "that" one, but even
a general consideration that the lives of those with intellectual disabilities
is one worth living.
Ricki was taking a psychiatric
drug (Resperdal) for the last two years of her life. She needed the drug,
without question, but it is a drug known to cause weight gain. Ricki had always
been on the "full" side, but she was active, and we were working on
curbing her eating. But with the Resperdal her weight ballooned. We asked the
doctor is there was no other medicine appropriate for her, and she said
"No. There IS a drug that acts in the same way, and doesn't cause weight
gain, but the health fund almost never prescribes it, and it costs $200 a
month." We asked her to apply for an exception for Ricki, but she refused.
"They NEVER agree to cover the cost for those with intellectual
disabilities; they assume that anyway they will be fat. It's a waste of time to
apply."
So we went a different route:
putting up the gate to block off the kitchen, checking that the school only
gave her one portion at lunch, etc. If we had known that her weight would have
lethal effects so quickly, we would have paid the monthly $200. I thought we
had time. We would have fought the health fund without the doctor's help. But
in my mind, the prejudice of the health fund helped kill my daughter.
.JPG)